Newby :): I've been suffering from bad... - Endometriosis UK

Endometriosis UK

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Bee_22 profile image
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I've been suffering from bad periods, bowel issues and everyday pain since I was 14 (8 years!). 6 years ago my amazing GP told me my symptoms weren't psychosomatic (can I hear a hallelujah?) and said I most likely had endometriosis. I was referred to the gynae at my local hospital, and made to look a complete fool. I was 'too young' and 'just feeling the pressures of school life' and discharged. When I was 19 my pain got even worse, I was at uni and spent most of my days at home rather than learning with my friends. I wanted answers! I was referred back to the gynae and she finally gave into my pleadings for a laparoscopy. Nothing was found; she told me whilst I was coming round from anaesthetic, refused to have a nurse there, and refused to see either my ma or myself afterwards. She discharged me with no further treatment. I was heartbroken, not only did I have no faith in her, but she made me feel like I'd wasted her time.

The pain worsened. I'd finished uni and got a job. Credit to them, they've been fabulous - they couldn't care less about my illnesses, just that I'm okay. Pretty rare this day and age. After changing GPs, my new Dr was concerned about my level of pain and didn't think twice when I asked him if he would refer me to a private consultant. My consultant has been amazing! From the 24th October (my first consultancy appointment) to now I have had my laparoscopy and burnt off moderate endometriosis - which, not surprisingly, has been there for more than three years! It's such a relief! I needed to know I wasn't mad, and that it was endo. I've received such good care! Unlike my two incisions the first time he had to do four to get rid of most of it. He had to leave one bit because it was too close to my bowel.

I wrote this to get it off my chest, and also for those ladies who are so disheartened by their first laparoscopy results. I'm not saying that you have to go private, as I know it's not an option for everyone. But it's more to encourage you to find someone you trust will help you regardless of the outcome. It's so easily missed, even when it's moderate. Keep fighting! And even though the dark days of relentless agony do rear their ugly head; you must stay positive. Not for your family, friends, partners... But for yourself. You, above anyone, deserve all the happiness in the world. Keep smiling you beautiful ladies! :)

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Bee_22
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5 Replies

Welcome and thanks for sharing your story :)

It's an outrage that so many of us have to go private to get anywhere :( the NHS sucks in some ways

x

Bee_22 profile image
Bee_22 in reply to

Thank you for your warm welcome :)

It is really. They're brilliant in some ways, and I would never bad mount the NHS as a whole, but endometriosis is so complex that they almost seem not to bother searching well enough for it. A shame. But hopefully the more and more people who raise awareness for it, the better the outcome!

Hope you're as pain free as possible! x

JuCeb profile image
JuCeb

That's a wonderful post which I'm sure will help a lot of women on here :)

I, like you, have endo around my bowels and bladder thus used to have issues with both until my specialist put me on a low dose of something called Amitriptyline, which has made a huge difference to my life! I am also lucky in that my current specialist is Susan Evans, author of endo and other pelvic pain book (I'm in South Australia) so feel I am in very good hands literally when I have my second lap next week x

Bee_22 profile image
Bee_22 in reply to JuCeb

Hello :)

I'm so glad to hear that your specialist has helped you so much, and has given you a drug to combat the pain well. There's not many medications that seem to help without having some form of side effect! I forgot to mention that I have the mirena coil, something that I would recommend, but never to someone who's not had children without anaesthetic. It was the most barbaric thing I've had to go through, and although it's been fabulous for three years (kind of! No proper periods anyway!) I still wouldn't have it put back in without anaesthetic.

What is the second lap for? Are you removing endo again? I hope you're feeling much better for Christmas!

I'm feeling much better after my lap now. Fairly extensive surgery, and two more holes than I thought I'd have, but I'm getting there. My muscles have overcompensated though - very sore back and diaphragm! But at least the sore throat and head cold (yep, had to get a cold before an op!) seem to have disappeared over night!

I wish you a pain free time of it before you're op! :) x

JuCeb profile image
JuCeb in reply to Bee_22

Yes, the mirena is being fitted during the op as I have a bad enough time with smears let alone fitting something like this!

Second lap is to remove some chocolate cysts from my left ovary again, as this is where they formed last time, so potentially the ovary may go aswell, it depends how damaged it is.

Thanks for your wishes, may you continue on your pain free path too :) x

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